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This one has taken me some time to write, mostly because, it has taken my some time to process.
So the beginning of April marked seven years since my diagnosis. It’s also around that same time, one my bi-yearly neurologist appointments happens, and my yearly MRI scans. I had my MRI at the end of April, and I met with my neurologist the following week, the beginning of May.
For SIX years, I have been on the same MS medication (I took a year off medication to due to trying to conceive, my pregnancy and breastfeeding journey). Now, MS medications aren’t a cure in any way. They are designed and used right now, to help slow progression and to help ease symptoms. For six years, my medication has been amazing. It has given me stable MRI scans, minimal to mild MS symptoms, and minimal medication side effects. Sadly, it’s starting to fail me.
When I sat down with my doctor three weeks ago, the news wasn’t the greatest. I’ve developed two new lesions on my brain, which are signs of disease progression.
UGHHHHHHH!
This one as been a hard blow. I knew at some point I would progress with this disease. I knew I wouldn’t stay this stable forever. But never in my wildest dreams did I think it would happen now. Not at 34, not with two toddlers at home, who don’t really understand what is happening to me. They’re too young to explain this to them. They know where I’m going when I have to go to appointments. I tell them, “Mommy is going to the doctor”, or “Mommy is going to get some tests done”, or “Mommy has to go get some special medicine.” I’ve told them little bits and pieces, but they don’t get it. They just want to see my boo-boos and “pokes” that I’ve gotten from all the needles and IV’s. This is what has been the hardest to process. They don’t get it, they’re so young and yet, I’m progressing.
I also never expected it to happen this young. Disease progression at 34! Granted, I have been fighting this battle for seven years now, and it was bound to happen at some point, but I didn’t think at 34. I figured it would be much later in my life, 60s maybe. I try to live a pretty healthy lifestyle, (even though there is no direct correlation between diet and MS) I do feel like when I’m eating healthier, I feel better in so many ways, including my symptoms. So, hearing the word progression at 34, reallllllllly stung.
After this news, I took some time to think. I did a three day course of steroids to help stop the inflammation happening and any residual symptoms. At my appointment, we talked about the next steps. He gave me some medications to look into, and some options to ponder.
Last week, I finally came to a decision. I’ll be starting a stronger medication, that will have to be administered via infusions. I’ll be saying goodbye the medicine that treated me so well for so long.
Now that I’ve taken some time and figured some things out, I finally feel like I’ve come to terms with things. When I first got a label to what was going on, it took time to process, and so did this news. But now that I have children, I feel like it was a bit harder to process. I knew this was going to be a lifelong fight when I found out seven years ago. It’s one I’m going to continue to fight.